Frank, Wally, Sara & Joey

Twenty seven years ago I worked in a convalescent hospital as a certified nursing assistant. Typically when you work in a facility such as this, you expect to take care of elderly patients. Petaluma Convalescent Hospital was a mixed bag of patients though. In the midst of the elderly and the dying, there were the young people. Since I was only 17 years old at the time, I wasn't aware of the disparity. I only saw the disability. Perhaps the most perplexing placement in that hospital was Frank. Even at my age, I knew he shouldn't be there. He was able to walk, feed and bathe himself. He could have come home with me and I thought about it all the time. It bugs me even to this day.

Frank was a young man, prematurely gray, who suffered from cerebral palsy. As a young teenager I couldn’t begin to fathom the depth of what imprisoned him. I am just now starting to comprehend it.

Cerebral palsy is a neuromuscular developmental disorder of the central nervous system. Its causes and effects are complex. It can happen before, during or after birth. Its origins have been linked to the genes and yet its effects can be as a result of an injury to the brain (such as lack of oxygen at birth). Some people with CP have gross motor impairment and paralysis, yet have brains that function on a cognitive level equal to you and me.

In my life I’ve known several people with C.P. Frank was someone I looked forward to seeing everyday. He had good days and bad days. His frustrations were mostly about being misunderstood. He would try so hard to communicate something and just resign himself to the fact that on some days he just couldn’t get his point across. I worried about him because I sensed he was resigned to his “prison”, where he was left alone with his thoughts, feelings, wishes and desires. These would remain bottled up in his mind because he lived in a body that wouldn’t allow an outlet for them to come out. On really bad days he would simply cry. I have tears in my eyes as I write this.

Wally is a man I was introduced to in an independent film, produced and directed by his friend, Bob Fink. He was 56 years old when his parents passed away. He lived with them all his life. He had no education and no real prospects. His life was centered around the family who loved him and the lawnmower he operated on his property. His story is compelling. Wally reminded me so much of Frank. As I watched the documentary about the conflicts his family was facing with regard to his future. Bob examines a common dilemma facing most families with members who require extended care; whether they suffer from C.P, Autism, or Downs Syndrome.

It is a film about the enormous complexity of loving and being loved. It’s a compelling and haunting. The films message says more about being “normal” than about what the obstacles are to being “disabled”. http://sweatyboyproductions.com

Joey Deacon and Sara didn’t know each other. I met Joey through his autobiography. His mother instinctually knew he was brilliant. Unfortunately she died before it could be realized.

Sara is a friend with triumphs and sorrows. Despite her “disability”, Sara graduated college with a bachelor’s degree, married and had four children. She overcame tremendous obstacles with her disabilities, but she continues to face prejudice and abuse because she suffers from the obvious affects of C.P. One assumes because she is ‘clumsy’ that she is somehow incompetent. She no longer resides with her family. Her story is still unfolding and it haunts me.

Joey Deacon was institutionalized most of his life. Because he was unable to communicate freely, he was “assumed” to be mentally retarded. However, with the help of his friends Ernie Roberts, Tom Blackburn, and Michael Sangster, he was able to write a book.

All four men had cerebral palsy in one form or another, yet cooperatively, they were able to open the channels for Joey’s words to flow. One couldn’t speak, so the other became the mouth, one couldn’t type, so the other became the fingers – like a fine oiled machine they became Joey’s voice. It is one of the most compelling books, I’ve ever read. The proceeds from Joey’s book released all four men from their institutional setting. Unfortunately, Britain both embraced and crucified Joey. I’ll leave it to you to figure out why. I love Frank and Joey (both have since passed away) and I worry about Wally and Sara. I hear from Bob Fink that Wally is coping well with his changes but I'm not so sure about Sara.

Frank, Wally, Sara & Joey possess part of my conscience. I look up to them in ways that people admire their heroes. Their lives are as important as any other. Their hopes, dreams and desires no less. We owe them something more. Perhaps our attention, our time, understanding and respect. They are simply prisoners in bodies that are locked. I pray we find the keys to unlock their doors because they have so much to teach us.

Tammy Maher is a resident of El Dorado Hills and a biweekly columnist for the Mountain Democrat. You can reach her by email at familyfare@sbcglobal.net or on the web at www.familyfare.blogspot.com

Holy Thursday

Why do Catholics spend so much time in church this week? What’s with the ritual? Why do they commemorate everything? The answer is Holy Week. Next to the Incarnation, or the birth of Christ, the entire answer lies in the triduum or (three days) of this week.

The disciples had already asked Jesus where he would eat the Paschal supper. Today before dawn the Lord sent for Peter, James and John, spoke to them at length concerning all they had to prepare and order at Jerusalem. Everything was preordained.

It was a night that would precipitate the following days of sorrow, despair, confusion and ultimately joy. It would be crowned with great awe and relief for the dawn of the Lord’s day would be forever redefined after this exceptional weekend. The Old Law would be replaced with the New for the series of acts initiated by Jesus initiated a New Covenant with God. The church would be conceived on this night and confirmed 43 days later at Pentecost. Holy Thursday was the matrimony of the Church, the institution of the priesthood, the Eucharist (Christ’s perpetual presence and sacrifice represented on the altars of the world until the end of time) and the ultimate initiation of His Love. The following is an excerpted explanation of this day from Fr. Thomas Keating who writes about the significance of the day.

“The texts read in the liturgy during Lent provide us with the means to understand the sacred mysteries of Holy Week. We think of the penitent woman who washed our Lord's feet with her tears and of Mary of Bethany who anointed his feet with the perfumed oil. It was the custom of the time to wash the feet of a guest, to offer him a kiss of welcome, and to anoint his head with ointment. It was not the custom, however, to kiss those feet or to wash them with one's tears; nor to place precious ointment of great price on the guest's feet rather than upon his head. Why such extremes on the part of these two devoted women?

They evidently wished to show that He was no ordinary guest. Surely the Divine Goodness, which praised the extravagance of these two women, would not do less than offer you and me the ordinary courtesies, if He invites us to His banquet table.

With this background in mind, we can understand why Jesus washed the feet of his disciples. They were to be His guests at the first Eucharistic supper, just as Christians are His guests at the commemoration of it. This sharing in the body and blood of the God-Man is the pledge of a still greater banquet: the eating and drinking of immortal life and love at the eternal banquet of heaven, where our nourishment will be the Divine Essence itself.

But as guests at the banquet table of the Lord in this world, and as recipients of the divine hospitality, the disciples had to receive at least the ordinary marks of courtesy; that is, the washing of the feet, the kiss of welcome, and the anointing with oil. These three acts form an organic whole. Omitting any one of them would have been to fail in courtesy, something the Father would never do to guests invited to His supper. These three marks of courtesy correspond to the three stages of Christian initiation.

First is the washing of the feet, symbol of baptism, which must precede the Eucharist. The Eucharist represents the kiss of welcome, the intimacy of union, and the mutual sharing of deep love. The anointing of the head with perfumed oil suggests the grace of the sacrament of confirmation. Jesus did not anoint the heads of his disciples on this occasion because the Spirit had not yet been poured out. After his passion and resurrection, however, this crowning courtesy was bestowed at Pentecost.

Catholic belief is that it is being bestowed in each reception of the Eucharist, especially in the yearly renewal of the Paschal mystery. We have seen John resting in Jesus' bosom at the Last Supper, a symbol foreshadowing and anticipating this grace. The anointing of Jesus by Mary of Bethany pointed to the outpouring of the Spirit upon him and upon all his members, especially those taking part in the supper. But John was given the reality beyond the symbol. Resting in Jesus' bosom, John received the grace of which the anointing of the head with ointment is the external sign.

These reminders of the divine hospitality, of the inconceivable courtesy that God has extended to us, make us approach the Paschal mystery with humble and grateful hearts. How can we thank the Lord for his invitation, for the incredible depth of his sharing?”

Have a joyful Easter weekend!

Tammy Maher is a resident of El Dorado Hills and biweekly columnist for the Mountain Democrat. You can reach her by email at familyfare@sbcglobal.net or on the web at familyfare.blogspot.com